GRRRRRRRRR I HATE LE..........
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I have a question for those of you who have more experience with lymphedema and since this forum is active thought one of you might have a quick answer. I sprained my ankle and took a hard fall on side my lymph nodes removed a few days ago. My arm and breast area (where breast removed) are also swollen fingers tingling. Is it possible that swelling in my foot is causing lymphedema symptoms? Any suggestions?
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Grrrrrrrr I hate LE too.
I read this evening on the stage IV forum that Linda-n3 passed away.
It is just not fair. Linda-n3 was a very special contributor to the Lymphedema forum and an inspiration to many of the long term readers here.
Kathy
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I just read that about Linda-n3 too, :-( we were diagnosed about the same time. She was always so positive and helpful.
NInja, logically I would say yes. Just because your lymph nodes have more to handle right now. Plus if you landed on the arm or side at all, it could cause more swelling.
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Ninja, I did a slide on my slippery kitchen floor a few months ago. I immediately called the PT to see how bad the after effects might be. I kept ice on the muscles I'd over stretched and did so every time I sat down....for a few weeks. I also kept the leg elevated. It did help keep the LE swelling at bay.
I would suggest icing everywhere you have swelling. Call your PT tomorrow just for peace of mind - that's what they're there for.
So sorry to hear about your friend ladies. We all want everyone to make it so it's that much harder when we have to say goodbye to someone.
Sue
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thank you ladies
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Oh, I'm so sorry to hear about Linda-n3! She had good things to contribute here, and always graciously.
Ninja, if you're going to use an ice pack, PAD IT WELL!!! Extremes of temperatures draw fluid to the area (y'know how after a really good snowball fight, when your hands are nearly frozen and you come inside to warm up, how your fingers swell?) which can overwhelm your compromised lymph system. So take it real easy on that. Cool is good; cold, not so much. Limit the time, too--10 to15 minutes at a time is enough.
Keep us posted on how you're doing! Gentle hugs,
Binney0 -
Maybe she will be showing me how to wrap or some such thing as that. The lumps are not LE lumps. They are swollen lymph nodes, either infection or cancer. The other lumps are on my chest wall. They are either "scar tissue" or cancer. I think those are the only possibilities for them. This is the "breast" that was removed, so the bumps have to be on the chest muscle. I think it is cancer, and the cancer has so blocked the lymph nodes that I have LE in the arm on that side. She has me scheduled twice a week through October. That's a long drive. I was expecting some tutoring on MLD and measuring. I did tell her about Lebed. It sounded familiar to her and she will check it out. Right now it's the only way I can clear my head and neck.
I'm so sorry for the loss of Linda. It does take a part of us when one of us moves on in that way. I've been trying to find Lisa (have her screen name in my messages). It has been about a year since she has been on. The last message I have is that she was struggling with radiation (very tired).
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I too am sorry to hear about Linda-n3's passing, my condolences to all who knew Linda.
I thought I would report on how my experiment with cutting out the underwire in my old bra went. The short of it, not that great.
It was really easy to cut out the wire using an Xacto knife and making a small slit. I decided to take out just the one wire to start out with. That left me pretty lop sided as the structure of the cup was gone, taking out the other wire left me with no support. There really was no point in wearing that bra since it served no purpose. Maybe it was that model of bra that really needs a wire for support and structure.
That being said, I did try another speciality shop and did find a few bras that give me a pretty similar shape and that come in fun patterns. These also have nice wide bans around the rib cage and at the shoulders. All the bras I picked up were from Anita Care, in case anyone is wondering.
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Oncearunner, I'm sorry your wire-removal didn't work out so well. The bras I did the wire surgery on had some padding that seems to help retain the cup shape. The Anita Care bras sound like a great solution. Thanks for the tip!
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Linda's passing, so sad.
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Ninja, how's the ankle? Binney was right about the icing. I forget we're all at different levels and assume everyone knows what they need to know.
My LE has gotten really bad, despite forcing myself to move around. It has now moved into my good leg so that makes one arm, both legs and trunk/abdomen. No matter how many times I do the MLD or walk or exercise, that darn fluid just won't budge. I drink lots of water all day long, eat right, low to no salt, etc. etc. etc.
I'm so discouraged by all of this. Anyone have any ides? I'm sure out of them. Thanks for letting me vent.
Sue
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Gosh, I hope some good ideas show up for you Sue.
My arm, arm pit, and under my arm hurt a lot. I never never never thought I would ever ever ever want to be wrapped, but I seriously can't wait until Wed to get it wrapped. I keep eyeing the ace bandages around here and telling myself no no no you don't know what you are doing and ace bandage a are not the same as lymohedema bandages. My wrist wants it badly though. It makes my hand ache.
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Sue: it sounds like you are doing all the things I know about. Can you see a LE therapist for help?
dune: it sucks to have to wait!! Keep hydrated,, I don't know what else to say while you wait.
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Sue, goodness, I'm so sorry--how discouraging! Let me at least share with you that several of us here have found that LE flares create a heightened sense of something like panic or despair, way more than can be accounted for by the situation itself. Maybe because the lymphatics are so pervasive they cause other reactions in our bodies that make the whole thing really difficult to handle.
It does sound like you're doing everything right, so pause a moment to pat yourself on the back--you deserve some kudos for being so aware and committed. Do you have a LE therapist you can connect with? What is s/he saying about your situation? Do you have well-fitting garments for your trunk and legs, and do they help with control the swelling? Do you have night garments you can use, or are you able to wrap? (If you're wrapping, do you wrap your legs too?) What sort of exercise are you doing, and does it help at all? Make things worse? We've had a lot of storm activity lately where I live, and it's definitely affecting my LE control--are you perhaps having some weather issues too?
Sending you huge hugs and prayers for some real answers,
Binney0 -
Thanks for the pep talk Binney. I decided today to stay wrapped pretty much 24/7 except when I shower. It will be hot but I'm going to give it a try.
I don't have anything for the trunk so I'm not sure what to do there other than keep doing the MLD. My OT has ordered the machine for the trunk and abdomen but it will be a few weeks before it arrives.
I had another thorocentesis today (lung drain). The doctor was the first one who was actually knowledgeable in LE! He said that exercise was the best thing for the LE. So, I promptly came home and fell asleep, lol. I don't see the OT for a few weeks again because I'm having a second pleurodesis surgery next week and had to put off all my appointments. When I went in last week all she did was measure me again. No massage
We'll see how the next few days go. Keep those ideas coming ladies! Sue
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milehigh: can you use Spanx or another compression garment for the truncal?0 -
Good idea Glennie and one the OT suggested. Have been homebound so haven't been able to go out and look for them. Don't want to order on internet because of fit issues. Will keep it in mind. Thanks! Sue
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i hear you with the FIT issue!! I haven't been able to find a Spanx or UnderArmour to fit me properly either. I'm using swell spots and a breast binder from EabMedical for my truncal.0 -
How do you go about getting compression garments? Does the LE therapist write a prescription, or do you go to a medical supply place and have them measure you?
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If you get a RX from your doctor,,, your insurance MIGHT cover it. Some insurances put it under durable medical equipment and the deductible might be different from your regular deductible. But I definitely recommend that you get a RX from your MD in the off chance that your insurance will pay. Also, in the state of FL,, if you have an RX, you will not be charged sales tax for "clothing",, that includes sleeves, mastectomy bras, etc. So even if you have to pay for it yourself, you might save yourself the sales tax at least.If your LE therapist can recommend a particular product, great! Mine was not really helpful about that,, and everything I learned for truncal garment compression, I learned on this forum. Everytime I would go to her appt with something,, she would be like: "Oh that's great." Wonderful,,, but why don't you know of these things? Why do I have to figure this out on my own? She did recommend Spanx and UnderArmour but unfortunately sizing of those garments didn't work out for me.
http://www.stepup-speakout.org/Lymphedema_garments.htm
That's a link to garments. If you scroll to the bottom, you will see compression shapewear, compression bras, swell spots and breast binders. Wander around through those sites and see what is available for the areas where you need compression.. Print off some pages and show to your MD or LE therapist. And try to figure out what will work for you.
www. lymphedemaproducts.com is a great site and has good prices. I bought my swell spots and sleeves there.
And if you do have a medical supply store nearby,, utilize them also. You will definitely need to get someone to measure you, your therapist or person at the store.
I have found it was not a easy process to figure out what I needed. I wish you the best of luck, and hope you have better LE therapist/medical supply shops in your area.
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Thank you a lot Glennie. That's helpful information.
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Sue I too have it in legs, trunk and also my neck as well as one arm. I currently don't ware garments and recently started back with MLD. Yes I have been bad all summer. It has been very hot this summer and I honestly don't think it would have helped. I find keeping my legs up is the best thing for them and during the summer they are always down and on the go.
My PT suggested spank for the legs or even very snug leggings were better than nothing. I am hoping to find some this winter...being plus size makes that hard then add the very large legs and it's an impossible task.
Anybody have United Health Care? Our insurance will be changing to them in October. I am hoping they may pay for garments and I can get some again.
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Thanks Kitty. Good to know I'm not alone. You may want to check with United before switching. I had them when first dx'd and they dropped me in the middle of chemo and then rescinded my policy going back almost two years. To this day I hate that company.
Sue
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We have no choice on our insurance. The company my DH works for is changing. We have kept insurance so we can't be denied insurance coverage here for anything pre esxisting.
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OMG, Sue, that's awful!! Grrrrrr on United!0 -
Super hot where I live right now. Been spoiled so far this summer… it's been so mild and haven't had to wear my sleeves much. Well … with the heat … comes the swelling … and you know the drill …
… broke out in full garments today … wraps for the fingers, sleeves, gloves for the other hand … all of it … that's the grrrrrr…..The fun part is … ran into a couple at lunch I haven't seen in years … talked to them a bit … as I was leaving … they pointed and asked, "What is that?" to my wrapped/gloved hand to which I replied, "Complications due to breast cancer surgery." To which he replied, "Well, I thought it looked cool, (pointing to the white wraps)…I thought it was lace and it looks very sophisticated."
Really? Never had anyone say that before … "They look sophisticated." So … to those of you who are self-conscious wearing your gear … you never really know what people are thinking. Took the grrrrr out of having to wear everything when it's above 100 degrees. 
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I like the ones that look kind of like lace. Definitely going for them.
I know we're not supposed to, but I started wrapping my arm and hand with ace bandages. It really knocked the swelling down. I'll get real wrap Wednesday.
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just getting caught up here. So sorry to hear about the passing of Linda-n3.
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Dunesleeper..........please be very careful. Ace bandages are very tight. If it's working that's great but maybe don't sleep with Ace on. Short stretch is the way to go. Here's to Wednesday!!0 -
Yeah I definitely don't sleep with them on. I took them off to wash dishes too.
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